Our research planning section focuses on specific research projects. Here we provide information about collections of data (research databases) and/or tissues (research tissue banks) that are used for research.
A research database is a structured collection of individual-level personal information, which is stored for potential research purposes beyond the life of a specific research project with defined endpoints.
A research tissue bank or biobank is a collection of human tissue or other biological material, which is stored for potential research use beyond the life of a specific project with ethical approval or for which ethical approval is pending.
Research purposes in this context refers to analysis of data to answer research questions in multiple projects.
Databases not created originally for research purposes may be used subsequently for research purposes. Also, databases originally established for a single research project can subsequently be used for additional research purposes. Research databases may therefore include:
Databases originally established for research purposes, including those:
- originally supporting one or more specific research projects but now used for other research purposes
- intended to establish a baseline for further research generating and directly supporting future research studies
- designed to support meta-analysis through collation of other databases.
Databases established for purposes other than research, where there is now an intention to use that database for research purposes, for example databases originally established to support:
- delivery of care
- audit or service evaluation
- population or health care planning
- databases established for multiple purposes, such as disease registers, where research is one of the intended purposes.
Personal information may include data from images, as well as the images themselves.
When planning a research tissue bank or a research database you will need to consider similar aspects as you would for project-based research.
Where the resource is a collection of data and tissue for the purposes of applying for ethical review the 'research tissue bank' option in IRAS should be used.
Research databases, research tissue banks and other biorepositories do not have a research sponsor. The data controller will be the organisation responsible for the management and oversight of the resource. Our General Data Protection Regulation (GDPR) guidance contains more information on the role of data controllers and requirements under the legislation.